“So if you’ve never had a stroke before, what are you doing here? Are you trying to run experiments on us?”
We sit there, slightly stunned. A brief yet uncomfortable silence elapses until I clear my throat and explain that we are fellows at MedStar, seeking to learn more about stroke patients’ needs.
King and I are at MedStar’s National Rehabilitation Hospital (NRH), conducting user interviews focused on the latest iterations of our top solutions. At this point in our fellowship, we’ve narrowed down to three (very exciting) ideas that we will further prototype and pilot in the upcoming weeks. Our first step is to talk to stroke patients more specifically about our ideas in order to challenge assumptions, get additional feedback, and identify potential challenges/pivots.
Prior to this focus group, we did our fair share of learning about user interview techniques through Stanford’s d.school resources and Acumen’s Design Kit courses in human-centered design and prototyping. We wrote transcripts, kept the language at an accessible reading level, and avoided leading questions. I meticulously planned my outfit (I figured light blue is a “personable”-looking color on me) and practiced non-creepy smiling and head-nodding in the mirror that morning. I thought it seemed straightforward: stick with the script and go through it with the user.
I thought wrongly. We had created personas and referenced patient anecdotes throughout the ideation process, but sitting down with stroke patients continually reminds me of the singularity of our user population. Some patients had one-sided weakness or paralysis (hemiparesis), other patients could only say a few words at a time (aphasia), and others were still in denial (anosognosia) of ever even having a stroke.
How do I interview a patient with aphasia who literally cannot verbally respond?
How do I ask a patient about secondary prevention of stroke when he or she is in denial about having a stroke in the first place?
Do I skip over questions about usability of products if these patients seem to have severe arm paralysis?
These questions tornadoed around my mind, but we were grateful for the support of the experienced clinicians at the MedStar NRH who helped us keep the conversation on track and walk away with valuable information. The experience certainly kept me thinking long past the 30 minutes we had for our first focus group.
We’ve done two preliminary sets of “focus group” patient interviews, and will launch into more interview and usability testing sessions in the upcoming months. I’m learning a lot about user interviews in the process of speaking with more patients. Here are a few lessons learned that will continue to serve us as we progress into usability and pilot testing:
Build rapport, but make it personal. The traditional small talk of building rapport is not always enough when we enter into a vulnerable space such as a rehabilitation hospital. King did a good job explaining our HFA goals in a first-person context, citing why improving stroke matters to him individually.
Non-response should challenge assumptions. No response may be due to confusion about the wording of the question, but it also should make me question what assumptions I made in framing the question. I should back up a bit and inquire about the topic in another way.
Break up words, break up questions. Questions that are multi-faceted are sometimes better delivered as a question and follow-up, or a series of discussion questions.
Write down non-verbal responses. I think I underestimated the power of non-verbal indications in my note-taking. My patient interview transcriptions include a lot of “furrowed brows” and sometimes even visual depictions of reactions.
Respect boundaries. I think reading a patient’s boundaries is really important when interviewing the stroke population. I need to be mindful of when a patient starts to seem tired, confused, or uncomfortable and adjust quickly to these sensitivities.
Steering back on track is okay. Sometimes due to cognitive impairments, patients can get off track when answering interview questions. It’s okay to jump in, reiterate the original question, and get us heading back in the right direction.
Write a flexible script. Stroke patients are so unique, depending on the varied combinations of disabilities they may have. Create a script that has alternative pathways depending on who I might find sitting in front of me.
A note from the editor: Does the work of an HFA fellow sound compelling to you? Learn more and apply by February 24 to join our 2017-18 fellowship.